Facilitating consumer partnerships in health research

Abstract

Background

Consumer engagement and involvement in health research is a well-established and growing priority for a better-informed public, a broader voice for research in relation to impact and funding, and guidance toward issues that matter most to consumers. These well recognized benefits of consumer engagement in research can be strengthened through training.

Methods

We describe a workshop for health researchers and consumers that was designed to provide a networking opportunity and introductory training, drawing from experience in Australia and the United States. Participants completed pre- and post-workshop surveys to assess the impact of the workshop.

Results

The workshop led to enhanced consumer awareness of contributions that can be made to all stages of the research cycle. Researchers who participated in the workshop had improved confidence and understanding of how to build partnerships with consumers. The development of sustainable financial models to provide ongoing training opportunities for consumers and researchers was identified as a critical priority. The workshop also led to the establishment of a new model that classifies consumer contributions to research into three tiers, based on varying levels of time commitment, training, scientific understanding, and managerial skills.

Conclusion

The workshop was well received as a networking and training opportunity, complementing other training frameworks for consumers and researchers. Training, funding, and supportive institutional policies were identified as key enablers for effective collaboration between consumers and researchers.

Graphical abstract

Schematic representation of a consumer-focused workshop aimed at strengthening partnerships between health researchers and consumers. The workshop brought together both groups to participate in structured training sessions and informal networking activities. The outcomes for health researchers included improved confidence and understanding of how to establish effective consumer partnerships. For consumers, the workshop increased awareness of their potential contributions across all stages of the research cycle. This model highlights the value of co-learning environments in fostering meaningful and sustained consumer-researcher collaboration in health research.

Background

The involvement of individuals personally affected by disease in research, policy, and health planning has been widely adopted and recognized as important [1]. Individuals with lived experiences can contribute to all stages of the translational research cycle, including identifying important research topics and pinpointing pathways for implementation of research findings in practice. Fostering consumer-researcher partnerships has benefits for both parties, including increasing the clinical relevance of research, broadening perspectives, and stimulating a sense of purpose to improve patient outcomes [1].

A health care consumer can be considered anyone who uses, has used, or may use health or health-related services [2]. This description can lead to confusion due to the broad range of roles, spanning a patient to a member of a research team. However, the roles of a patient, clinical trial participant, or focus group attendee differ substantially from a consumer who works with researchers to design and disseminate health research. Similarly, the term patient advocate, widely used in the United States, can also lead to confusion, as this role can encompass any person who advocates for patients through research or other capacities. The varying roles of consumers have been discussed for several decades in various national frameworks and recommendations (Table 1). Consumers who align with the roles of an advocate, advisor, expert, or partner are usually those who are sufficiently distanced from their own experience of a disease to be able to make objective contributions.

Table 1.

Examples of consumer roles described in National and multinational frameworks or recommendations

Role	Description
National Framework for Consumer Involvement in Cancer Control, Cancer Australia, Australia [3]
Personal engagement	Provides a personal perspective through story-telling and focus groups
Advocate	Provides public support for the perspectives of consumers
Advisor	Influences decisions by providing a consumer perspective based on the best available evidence
Expert	Provides expertise based on longstanding experience in consumer involvement and an ability to present the views of a broad network of consumers
Partner	Co-designs as an equal partner
Advocates in Research Working Group Recommendations, National Cancer Institute, United States [4]
Advising	Provides advice on strategic research directions and policies
Designing	Designs new research activities or revises old ones
Reviewing	Reviews research proposals and activities
Disseminating	Disseminates scientific information to lay audiences
Stakeholder Relations Management Framework, European Medicines Agency, European Union [5]
Inform	Awareness and understanding of relevant information
Consult	Provides written opinions through surveys or consultations
Consult/involve	Direct interactions, feedback, and engagement through workshops, meetings, or conferences
Cooperate/participate	Provides technical expertise through direct involvement

Preclinical researchers have less opportunities to establish connections with consumers compared to clinician-scientists, who have frequent interactions with patients, support groups, and caregivers. The lack of opportunities to form initial connections highlights a critical need to provide resources, such as an institutional point of contact, laboratory tours, and workshops that bring together preclinical health researchers and consumers. Additionally, clinician-scientists, hospital support groups, consumer organizations, and funding agencies are often valuable resources for making connections with health consumers.

To provide a networking and introductory training opportunity for researchers and consumers, a 2.5-hour in-person workshop with approximately 55 participants was organized in Australia. Consumers from the United States also participated in the workshop to provide diverse perspectives and foster cross-cultural understanding. Workshop attendees had varying levels of experience in consumer-researcher partnerships. The workshop objectives were: (i) voice consumer perspectives within Australia and the United States, particularly in the breast cancer space, (ii) highlight key initiatives led by consumer organizations, (iii) foster communication between consumers, researchers, and clinicians to strengthen collaborative research partnerships, and (iv) identify practical strategies for recruiting, training, and supporting consumer involvement in research projects. The workshop featured brief talks, roundtable discussions, and other interactive activities (Fig. 1). Key themes covered in the workshop were the benefits and barriers of collaborations, initiating partnerships between researchers and consumers, consumer roles, maintaining effective collaborations, and training needs. Other topics, such as policy, collective leadership, study design, and data literacy were not included due to the condensed format. The 2.5-hour format was selected to balance attention span, learning, and scheduling constraints. The shorter format also enabled the workshop to be integrated within a full-day research forum, exposing researchers who might be less likely to attend stand-alone training to consumer collaborations.

Fig. 1.

Consumer-researcher workshop. Workshop format overview and a word cloud generated from an interactive activity where participants identified key components of successful collaboration. These components were displayed on the walls as a colorful and visual reminder throughout the day. The word cloud was constructed with Microsoft Forms

The findings from the surveys indicated that the workshop fostered mutual understanding between consumers, researchers, and clinicians, promoting more effective and inclusive partnerships. Insights gained from the discussions are currently informing the development of sustainable actions for consumer engagement and training, with the goal of enhancing research relevance, quality, and impact.

Methods

The free workshop was promoted to hospitals, universities, and consumer organizations in Australia, as well as to collaborators based in the United States. Workshop participants completed anonymous pre- and post-workshop surveys to aid in determining the perceived impact of the workshop. The study was assessed by The University of Queensland Research Ethics and Integrity department (project 2024/HE002013) according to the National Statement on Ethical Conduct in Human Research (NHMRC) in Australia and relevant institutional policy (PPL 4.20.07) and deemed to be exempt from ethics review. All workshop participants were eligible to take part in the research on a voluntary basis. Participants were informed that participation would not yield personal benefits, but outcomes may benefit future workshop attendees, the wider community, and the broader field. Participants were informed that their choice to participate or decline would not affect their relationship with the research team, The University of Queensland, or any affiliated organization. The paper-based surveys with multiple choice and open-ended questions were designed to be completed within 10 min, with time allocated before and after the workshop for this activity. Submission was considered an indication of informed consent.

Results

Training health consumers in research engagement

Specialized training opportunities equip health consumers with knowledge and understanding of rights, responsibilities, scientific concepts, data literacy, and interpersonal communication skills, empowering them to identify with a role that is commensurate with their capabilities and commitment. Table 2 lists examples of consumer training programs available in Australia and internationally. These training programs differ in training focus and funding sources. Some programs primarily focus on understanding the basic principles of consumer engagement, while others, such as Project LEAD in the United States, also focus on providing consumers with scientific knowledge and data literacy [6]. Regulatory agencies in Europe and the United States have a key role in driving consumer training [7], while Health Canada and the Therapeutic Goods Administration in Australia engage consumers in a less structured manner through educational materials and consultation opportunities. Opportunities exist to adapt exemplar frameworks for consumer training, accounting for differences in culture, healthcare, infrastructure, research funding systems, and policies.

Table 2.

Select examples of training programs for consumer engagement in health research

Training program	Description	Reference
Australia
Consumer and Community Involvement Program, Western Australian Health Translation Network	Various online workshops and e-modules (3 h each) for consumers and researchers, covering topics, such as, benefits of collaboration, roles, and collaboration plans.	[8]
Seat at the Table program, Breast Cancer Network Australia	Three online courses and an in-person workshop for breast cancer consumers, covering topics, such as, consumer roles and breast cancer science.	[9]
Joint Research Training - Consumer Involvement in Health Research, Health Consumers NSW	Introductory online course (1–2 h) and in-depth in-person course (4 h) for consumers and researchers, covering topics, such as, benefits of collaboration, roles, tools for collaboration, and types of research studies.	[10]
Europe
European Patients Academy of Therapeutic Innovation, Global	Online toolbox, matchmaking platform for consumers and researchers, online modules, and online and in-person workshops for consumers, covering topics, such as, drug discovery and design, clinical development, and regulatory considerations. Additional platforms in 24 countries aim to promote engagement at the national and local level.	[11–13]
National Institute for Health and Care Research, United Kingdom	Three-week (3 h per week) online course for consumers covering topics, such as lay-summaries, review of documents, and match-making services to connect consumers to specific research projects.	[14]
United States
Scientist-Survivor Program, American Association for Cancer Research	In-person meeting (over several days) for cancer consumers, covering topics, such as cancer science, research design, advocacy, and policy	[15]
Project LEAD, National Breast Cancer Coalition	Combination of six online modules and two face-to-face workshops (one online, one in-person) covering topics relating to drug design and discovery, clinical development and trials, and regulatory considerations to increase consumer awareness and information about health research. Webinars about relevant topics are also offered.	[6]
ANGEL Advocacy Program, Tigerlily Foundation	Online training over five weeks (1–2 h/week) for Black and Brown breast cancer consumers, covering topics, such as, advocacy, health equity, and breast cancer science. Additional training available in topics, such as, research, outreach, and policy.	[16]

The examples illustrate various training approaches but do not imply endorsement or provide a comprehensive list of available programs

In the Australian context, there is a need to further enable consumers to attend events and meetings to engage with health researchers. The workshop organized in Australia provided a networking and learning opportunity for consumers. The workshop was made possible by funding from various organizations listed in the acknowledgement section, highlighting the important impact of funding agencies in facilitating consumer partnerships and training in health research. Pre- and post-workshop surveys provided valuable insights into consumer awareness and preparedness for collaborations with health researchers. For example, the workshop led to increased awareness of consumers being able to collaborate with health researchers across the research cycle (Fig. 2A). When consumers were asked about readiness to collaborate with researchers, responses shifted from ‘strongly agree’ to ‘agree’ as a result of the workshop (Fig. 2A). More consumers were confident about collaborating with researchers after the workshop, although the level of agreement shifted somewhat from ‘strongly agree’ to ‘agree’ (Fig. 2A). Additionally, when asked whether their lived experiences would be valued by health researchers the level of agreement shifted slightly from ‘strongly agree’ to ‘agree’ (Fig. 2A). These shifts are most likely attributable to the workshop highlighting complexities of research and effective collaboration, causing consumers to adopt a more realistic perspective, which may encourage further training. Neutral responses were more common before the workshop and shifted almost entirely to agree as a result of the workshop (Fig. 2A). Taken together, consumers remained positive after the workshop, but voiced their optimism with greater nuance, possibly reflecting a more informed outlook.

Fig. 2.

Survey outcomes regarding workshop experiences and learning. A Survey responses from consumers. n = 10–16 (pre-survey), n = 8 (post-survey). (B Survey responses from researchers. n = 36–37 (pre-survey), n = 23 (post-survey). Agreement level represents percentage of total responses

In 1969, a key framework termed the Arnstein’s ladder was proposed to illustrate levels of citizen participation in decision making [17]. Since then various frameworks of engagement have been developed, including those specifically focused on health research (Table 1) [18]. However, these models rarely address consumer training and commitment needs at varying levels of participation. The workshop led to the establishment of a unique three-tier engagement framework that outlines consumer contributions in terms of required training, time commitments, scientific knowledge, and managerial expertise (Fig. 3). The model emphasizes the importance of aligning consumer skills and training with appropriate engagement roles. The first tier involves sharing lived experiences to inform and motivate research, requiring time commitments and a willingness to contribute, which usually arises after the initial shock of diagnosis or trauma. Such contributions also entail an emotional commitment, and for many, this can be challenging due to the need to prioritize wellbeing and/or manage advanced disease. The first engagement tier enables consumers to contribute to research with personal perspectives without specialized training being a barrier. The second tier is that of collaboration, involving design, review, and dissemination of research, which requires additional time commitments, training, and scientific knowledge. The most advanced tier involves consumers co-leading research, demanding the greatest commitment of time, training, scientific understanding, and managerial skills. In cases where a health researcher works on a disease that they have endured, in-depth levels of scientific understanding combined with personal insights are valuable [19]; although this does not equate to having experience as a consumer that broadly advocates on behalf of patients.

Fig. 3.

Tiers of engagement outlining consumer contributions to research. Each tier requires progressively greater time, training, scientific literacy, and managerial skills, as shown by the increasing number of blocks. Example topics for basic, intermediate, and advanced training are also provided

Training health researchers in consumer engagement

Another key component of effective consumer-researcher partnerships is training programs that increase researcher knowledge and skills in consumer engagement. In Australia and globally, such training primarily consists of in-person or online short courses and workshops that focus on a subset of skills (Table 3). One-off workshops can be effective, as indicated by our survey results, demonstrating a 29% and 24%-point increase in the proportion of researchers selecting higher agreement options in relation to their understanding of how to collaborate with consumers and confidence in doing so, respectively (Fig. 2B).

Table 3.

Select examples of consumer engagement training programs for health researchers

Training program	Description	References
Alberta SPOR SUPPORT Unit, Alberta Innovates, Canada	Short online courses, long certificate courses (2–6 months), and graduate courses (3-credit), covering topics, such as consumer engagement frameworks, team building, and communication skills .	[20]
National Co-ordinating Centre for Public Engagement, United Kingdom	Various workshops (~ 3 h) focused on creating partnerships, collaboration, and frameworks on public engagement. Seven-month development programs focused on building researcher capacity, leadership development and communication skills in public engagement. Networks to foster connection and communication along with fellowships to support researcher initiatives in public engagement.	[21]
Cornell Graduate Certificate of Engagement in Public Communication of Science and Technology, Cornell University, United States	Four component curricula consisting of science communication workshops, presentations and forum discussions with consumers involved as judges, presenters and/or attendees.	[22]
Consumer and Community Involvement, Monash Partners, Australia	Six online modules focused on topics, such as benefits, roles, values, policy documents, strategies, ethics, power dynamics, and co-design.	[23]
Consumer and Community Involvement Program, Western Australian Health Translation Network, Australia	Various online workshops and e-modules (three hours/each) for consumers and researchers, covering topics, such as benefits of collaboration, roles, collaboration plans, plain language writing, and grant writing.	[24]
Harvard Catalyst, Community-Engaged Research Course, United States	Two-month course comprised of three online modules, including discussions and activities. Topics covered are principles of engagement and collaboration.	[25]

The examples illustrate various training approaches but do not imply endorsement or provide a comprehensive list of available programs

The workshop organized in Australia included presentations, round table discussions, activities, and networking opportunities focused on the benefits of collaboration, initiating partnerships with consumers, maintaining effective collaborations, and training needs. However, multifaceted practical skills are required for successful partnerships between consumers and researchers [26]. The workshop discussion highlighted the need to develop comprehensive long-term training programs, in addition to short training sessions. Several key areas of additional training for long-term programs were identified and supported by the literature, including collective leadership and considerations around ethics and policy (Table 4). Some existing long-term training programs lack interactions with consumers, instead focusing on a theoretical understanding of consumer engagement. Therefore, in-person workshops that bring consumers and researchers together are valuable to integrate into long-term training. Courses could also include a buddy program where a consumer is paired with a researcher. The co-design of such long-term training courses with consumers was identified as being critical to ensure appropriate content. A key conclusion of the discussion was that training should occur at an early career/project stage to enable researchers to build long-term consumer partnerships. However, early-career researcher participation in training programs remains a key hurdle, and greater institutional support is needed to promote engagement.

Table 4.

Key skills and knowledge areas for training researchers in consumer engagement

Understanding benefits of collaboration [15, 24, 26]
Research impact
•  Increased clinical relevance (maximised benefits to society)
•  Increased clinical feasibility
•  Credibility and trustworthiness (facilitate adoption in clinical practice)
Funding and resources
•  Efficient use of translational research funding and resources
•  Eligibility for grant applications
Social rewards
•  Recognition and acknowledgement
•  Networking opportunities
•  Community engagement
Personal rewards
•  Skill development (for example, science communication)
•  Sense of purpose
•  Empowerment

Ethical and moral considerations [15, 24, 26]
Fairness and equity
•  Appropriate consumer remuneration for involvement (ensures that consumers are compensated fairly for their time and expertise)
•  Protection of vulnerable groups (guards against exploitation of those with limited capacity to advocate for themselves)
•  Health equity (promotes equal access to the benefits of research for all demographic groups, especially underserved communities)
Transparency and acknowledgement
•  Consumer contributions included on research reports and publications
•  Communicating research findings to consumers with transparency
Respect and autonomy
•  Informed consent (upholds the right of individuals to understand the purpose of the study, procedures, and risks before agreeing to participate)
•  Equal voice in discussions (ensures that consumers have the same opportunity to contribute ideas as researchers)
Policy and compliance
•  Adhering to institutional, national, and international policy documents (keeps research activities within legal and institutional frameworks)
•  Patent law (may prohibit sharing of information with the public)

Strategies to engage and communicate with consumers [15, 22, 24, 26]
Structural foundations
•  Guidelines and frameworks (defining roles, responsibilities, and best practices for consumer engagement)
•  Written agreements between all parties (outlining expectations and resource commitments before collaboration begins)
Collaborative planning and transparency
•  Co-planned, transparent activities and processes (consumers are involved in designing research activities, timelines, and decision-making processes, ensuring that agendas, budgets, and outcomes are openly shared)
Communication
•  Ability to present scientific concepts and findings in lay language
•  Managing different communication styles (adapt tone and format, for example, verbal, written, visual to suit diverse preferences)
•  Bidirectional and continuous communication (maintain open channels for feedback and updates, ensuring information flows both ways throughout the project)
•  Empathetic communication (listen actively and acknowledge consumer experiences and concerns to build trust and rapport)
•  Clear communication (use concise, lay language and confirm understanding to prevent confusion)

Collective leadership skills (adapted from sustainability education) [16]
Personal competencies
•  Demonstration of self-awareness and emotional intelligence
Network building
•  Creation of networks across stakeholders (researchers, consumers, administrators, clinicians, executives)
Knowledge integration and co-creation
•  Creation of dialogic spaces where diverse interests, perspectives, and forms of knowledge are heard, leading to the joint construction of new ideas
•  Use of frameworks that provide clear direction, accountability, and flexibility for corrections
•  Integration of diverse sources of knowledge, recognition of the limits of knowledge, and navigation of non-knowledge
•  Implementation of participatory decision-making
•  Consideration of health research within economic, social, political, and cultural contexts
•  Creation of a shared vision
•  Coordination of collaborative efforts, for example, arranging regular meetings, setting expectations, identifying roles, and determining timelines
•  Co-design
•  Shared value creation
Conflict management
•  Management of different and/or contradictory priorities, time horizons, and interests
•  Management of complexity, disagreements, uncertainty, ambiguities, and changing dynamics

Overall outcomes and satisfaction with the workshop

Consumer collaborations with health researchers often occur in the clinical setting, ranging from memberships in advisory/steering committees to reviewers of clinical trial proposals. However, consumers can offer valuable perspectives throughout the entire research cycle, including preclinical research. Therefore, it is critical to provide opportunities for consumers and preclinical researchers to connect and engage in training. The described workshop for health researchers and consumers was well received as a networking and training opportunity, as validated by the survey results (Fig. 4) and voluntary anonymous quotes from both consumers and researchers (Table 5). In particular, participants pledged to maintain momentum and deepen engagement, motivated by the belief that collaboration is mutually enriching (Table 5). The survey results revealed that 90% of participants indicated that the workshop met or exceeded their expectations, while 95% reported feeling empowered, engaged and informed as part of the workshop (Fig. 4). Additionally, 100% of participants stated that they gained new knowledge on consumer-researcher collaborations (Fig. 4).

Fig. 4.

Overall workshop outcomes and satisfaction. Participant responses to post-survey questions relating to overall workshop outcomes displayed as a percentage of total responses. n = 33–34

Table 5.

Examples of anonymous participant quotes pertaining to the workshop

Researchers

Collaborations between researchers and consumers [are] very important and we can learn so much from each other and training to [do] this effectively is important.

I got so much out of this workshop. Let’s keep the momentum up and continue to bring consumers and researchers together in this way.

Hearing from people with lived experience [gave me] great motivation to address issues relevant to people.

This is such an important space and we are all here to make positive change.

It was a great experience hearing different perspectives from researchers and consumers.

Consumers

Collaboration between researchers and consumers is necessary and invaluable.

All voices are equal, and we’re all connected by our humanity.

There is value [in the] relationships between consumers and researchers.

[As a result of the workshop, I plan to…] increase my involvement as a consumer with health researchers.

[As a result of the workshop, I plan to…] connect with researchers to add a consumer voice and face.

Additional text was added in square brackets to improve clarity

Discussion

Consumers involved in health research are generally volunteers who either operate independently or align themselves with organizations or researchers. A lack of structure, financial support, and proper training limits consumers from making meaningful contributions to health research collaborations. It is common for consumers to be invited to participate in health research projects to fulfill grant application requirements, often lacking understanding, experience, or knowledge of the assigned role, scientific concepts, and personal/societal benefits. This inexperience may occur due to a lack of resources, time, and training for new researchers and consumers. Additionally, consumers trying to function in environments that lack supportive structures run the risk of becoming overutilized and overwhelmed. A critical step forward in overcoming barriers to effective consumer-researcher collaborations is to recognize the importance of identifying skills that align with specific roles or tasks. Identifying suitable roles for consumers in research projects can be challenging and developing the relationships needed to determine that fit takes time. Effective practices entail developing relationships early, planning and budgeting ahead of time, incorporating flexibility, agreeing on roles, mutual respect through open and collaborative dialogue, participatory decision-making, and seeking advice from experienced consumers [26].

Frameworks, institutional structures, and training for both consumers and researchers varies substantially across countries. Preferred terminology differs between funding bodies and countries, with examples including patient and public involvement, consumer engagement, and patient-oriented research, making cross-country comparisons challenging [27]. Furthermore, middle- to low-income countries have less resources for consumer engagement in research [28]. The widespread implementation of online training programs could facilitate global engagement; however, complementary national and local programs are necessary to address local cultural norms, socioeconomic realities, and governance structures. The European Patients Academy of Therapeutic Innovation serves as an exemplar of multinational resources and national platforms across 24 countries [29, 11, 12].

The workshop identified the lack of dedicated funding to remunerate consumers as a major constraint for collaboration, emphasizing the need for institutions to support consumer remuneration before research funding is awarded, and for funding agencies to permit and enforce the inclusion of such budget items. Exemplars include government research funding schemes that mandate a dedicated budget for education, outreach, and consumer engagement [13]. Another source of funding to enable consumer involvement in research is the pharmaceutical industry. For example, more than 60% and 80% of consumer organizations receive sponsorship from industry in the Netherlands [30] and United States [31], respectively. Funding from the pharmaceutical industry can offer bidirectional benefits, fostering connection, understanding, transparency, and accountability, when guided by clear ethical standards and safeguards to prevent actual or perceived conflicts of interest. Most consumer organizations fail to disclose complete details of industry funding on websites and annual reports and only a few have publicly disclosed policies for managing conflicts of interest [30, 31]. Therefore, improved transparency among consumer organizations is a priority to ensure unbiased advocacy. Taken together, limited budgets for consumer-researcher collaborations necessitate exploring multiple funding sources, including transparent, ethical industry partnerships. Nevertheless, industry funding does not replace or reduce the need for university and government funding to support consumer involvement in health research.

An additional barrier to collaboration between consumers and researchers is a lack of diverse performance metrics in academia [32], leading to researchers prioritizing job security over establishing consumer collaborations beyond the minimum requirements set by funding agencies. Accordingly, a lack of training, time, funding, and supportive institutional policies can lead to sub-optimal engagement, which can be perceived as tokenistic by consumers [27]. Therefore, institutional policies that recognize the contributions of academic researchers to consumer collaborations is likely to fuel meaningful consumer involvement in research.

Conclusions and future directions

In the Australian and global setting, there is a need for comprehensive training programs to generate successful and long-term collaborations between consumers and researchers. The 2.5-hour workshop format provided a well-received introductory session to raise awareness of additional training opportunities and provide a setting for initial connections to be formed between health researchers and consumers. Consumers who participated in the workshop had increased awareness of contributions that can be made across the research cycle. Before the workshop, researchers reported lower levels of agreement compared to consumers on questions related to readiness, confidence, and importance of consumer-researcher collaborations. The workshop reversed these trends, increasing the extent of agreement for researchers, while lowering it for consumers. Notably, both groups converged on similar agreement levels regarding confidence after the workshop, which may indicate that consumers developed a more nuanced understanding of the translational pipeline, practical hurdles, and scope of collaboration. Additionally, social-norm alignment during group discussion may have further pulled both groups toward a common middle ground, reducing extreme responses.

The workshop discussions led to the establishment of a new three-tiered model that categorizes consumer contributions to research based on training, time commitment, managerial skills, and scientific understanding. Training and supportive institutional policies were identified as key enablers for effective collaboration between consumers and researchers.

In subsequent workshops, questions could be further broken down to assess the confidence and readiness of consumers and researchers in different aspects of collaboration, aiding in identifying specific training needs. A limitation of the study design was that long-term outcomes of the workshop were not assessed. A future design consideration is the use of follow-up surveys after several months to evaluate the lasting impacts of consumer-researcher workshops. An additional limitation is that the workshop did not collect age and gender data, which are important considerations for future workshops. In general, a higher proportion of women compared to men engage with health research as consumers [33]. Additionally, the absence of representation from minority groups in consumer-researcher partnerships is a key challenge and area for improvement globally [34, 35]. The intersectionality of gender, age, race, disability, socioeconomic status and other factors are also often overlooked and need to be considered when evaluating the effectiveness of training programs and developing consumer-researcher engagement frameworks [36]. Finally, the development of sustainable financial models to remunerate consumers and provide ongoing development opportunities is critical.

Author contributions

Conceptualization, methodology, review and editing of writing: all authors; formal analysis and investigation: RG; writing of original draft: LY, JW, RG; Visualization: BW, JW, MW, RG. Supervision and project administration: JW; funding acquisition: EWT, FSFG, LY, JW, and RG.

Funding

Partial funding for this work was provided by The University of Queensland, Australia (FSFG, JM, JW), the Centre for Genomics and Personalised Health, Queensland University of Technology, Australia (EWT), the Translational Research Institute, Australia (BW), the Medical Research Future Fund, Australia under award number MRFF2019485 (FSFG, JW), the National Breast Cancer Foundation, Australia under award number 2023/IIRS0063 (FSFG, JW), the National Heart Foundation of Australia under award number 108500-2024_FLF (JW), Health Translation Queensland, Australia (EWT, FSFG, LY, JW, RG), PA Research Foundation, Australia (FSFG, JW), and the Australian Government Research Training Program Scholarship (RG). The Translational Research Institute receives support from the Australian Government. The content is solely the responsibility of the authors and does not necessarily represent the official views of the organizations and funding agencies.

Data availability

All data generated or analyzed during this study are included in the manuscript. Additional information is available from the corresponding authors upon reasonable request.

Declarations

Ethics approval and consent to participate

The study was assessed by The University of Queensland Research Ethics and Integrity department (project 2024/HE002013) according to the National Statement on Ethical Conduct in Human Research (NHMRC) in Australia and relevant institutional policy (PPL 4.20.07). The study was deemed exempt from ethics review due to negligible risks to participants, minimal inconvenience to participants, collection of non‑identifiable data, and the use of anonymous surveys. All workshop participants were given verbal information about the study and a written information sheet, stating that submission of surveys was voluntary and considered an indication of informed consent.

Competing interests

LY is employed as a Peer Support Coordinator at the Wesley Hospital Choices Cancer Support Centre, Australia, an unpaid President and Chair of the Board of Reach to Recovery International, and co-founder and co-facilitator of Everycloud Consumer and Research Advocacy Training Programs, Australia. LY is a research advisory committee member and a consumer advisory group member of the National Breast Cancer Foundation, Australia, a research advisory group member for Cancer Council Queensland, Australia, an external advisory committee member of the Centre for Health Economics Research & Evaluation, University of Technology, Australia, and a consumer advisory panel member for the Australia and New Zealand Urogenital and Prostate Cancer Group. AD is on the advisory boards of CanCare Houston, United States and the National Minority Quality Forum Cancer Stage Shifting Initiative, United States. AD has leadership roles in the American Cancer Society and Living Beyond Breast Cancer, United States. FSFG is a board member of Cure Cancer Australia. BW is a working group member of Health Translation Queensland Consumer and Community Involvement in Research Alliance, Australia. MW is a consumer member of Bloomhill Cancer Care’s Lived Experience Group and a consumer representative on committees at the Sunshine Coast University Hospital, Australia. LY and MW have received consumer honoraria from Health Translation Queensland and The University of Queensland, Australia. MW has received consumer honoraria from the QIMR Berghofer Medical Research Institute, Australia. AD has received consumer honoraria from the National Breast Cancer Foundation through The University of Queensland, Australia, payment for an expert testimony from Myriad Genetics, United States, and support for meeting attendance from The University of Queensland, Australia.